Novartis Announces Funding for Projects Aimed at Supporting Sickle Cell Disease Community

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by Mary Chapman |

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For this year’s Solutions to Empower Patients (STEP) program, global healthcare company Novartis has announced it will fund up to five original and creative ideas to help sickle cell disease (SCD) patients and their families.

Each selected proposal will be awarded up to $50,000. Specifically, Novartis is seeking submissions that show innovation in health education and empowerment. The contest is open to any U.S.-based organization that supports those affected by the genetic blood disorder. The deadline for submissions is Dec. 21.

Proposals should center on one of the following topics: empowering patients to advocate for themselves; providing resources that help patients better interact with healthcare providers and navigate the healthcare system; educating healthcare providers about SCD management and patient needs; developing programs to ease transition to adult care; and providing training programs for healthcare professionals to raise awareness and reduce levels of institutional biases toward the disease and patients.

“People living with sickle cell disease face unique challenges,” Ameek Mallik, executive vice president and head of Novartis oncology in the U.S., said in a press release. “By helping fund innovative programs developed by the organizations that best understand these challenges, we hope to make the biggest impact for those affected by this disease, where there continues to be a significant unmet need.”

Proposals will be assessed by an external committee of multidisciplinary experts, and judged for degree of innovation and prospective impact on the SCD community in an increasingly complex healthcare environment. They may expand or improve upon an existing program.

Organizations should send submission forms or any questions to [email protected] Program overview and eligibility requirements are available here.

Funding will be provided at the start of 2019, when the committee’s decision will be announced. While proposed projects need not last exactly one calendar year, they must begin next year.

The STEP program was created to help empower patients with a specific disease with significant unmet needs to navigate paths to better care. Last year, the program’s first three organizations involved with metastatic breast cancer received funding.

SCD is a group of disorders that cause red blood cells to become misshapen and break down, often causing severe, debilitating pain and blood vessel and organ damage. While SCD affects roughly 100,000 U.S. residents, it occurs in one in every 365 African-American births and one of every 16,300 Hispanic-American births.

Due to a limited number of SCD specialists, many patients turn to emergency rooms during pain crises, where they may receive delayed or less-than-optimal care. Some ER patients face racial bias, or are perceived as drug-seekers.

In addition, the transition from pediatric to adult care can be difficult for patients and their families due to inadequate access to providers, poor communication between former and new providers, and insurance issues, Novartis said.

The company has introduced an investigational therapy called crizanlizumab that reduces occurrences of a disease complication that can lead to irreversible or fatal organ damage, according to mid-stage data. The company expects to file the treatment with the Food and Drug Administration next year.